The parents of a little girl who has spent the past five years living at Auckland's Starship Hospital have struck another hurdle in their desperate bid to bring their daughter home.
Ana-Carolina de Moraes Lobo Bircham, 6, was last month given the green light to go home with her parents today - meaning she would finally be tucked into her own bed and be able to play in her own backyard for the first time.
However, due to logistical reasons - including health authorities not being able to find enough nursing staff to look after Ana-Carolina - her discharge date has been deferred to June 12.
"We are feeling mixed emotions. We desperately want to take Ana-Carolina home but at the same time we want to ensure her safety," her mum Elane de Moraes Lobo told the Herald.
She says they need seven nurses in total to help provide care for her daughter at home.
For four hours of each day de Moraes Lobo and her husband, Ana-Carolina's father, Peter Bircham, will provide sole care to their daughter but nursing staff are needed for the remaining 20 hours, seven days a week.
In order to ensure the safety of the staff and Ana-Carolina, health authorities have come up with a roster which requires five staff - and two extra people are needed as a back up if one is sick.
Ana-Carolina lost her ability to breathe, speak and move due to a neurological disorder called Guillain Barre syndrome, discovered when she was just months old.
She has the active and inquiring mind of any school-age child but is almost completely paralysed.
But she continues to fight - communicating by blinking her eyes or with the limited use of her eye-controlled computer, and breathing through a ventilator.
For years, her parents have been pleading with the health authorities to find a way to let their daughter come home.
Since Ana-Carolina was 5-months-old her parents have spent 20 hours of each day caring for their daughter at the hospital's intensive car unit, often sleeping only every second day.
Living in the hospital has put a huge strain on the family.
"Every day people are dying around us, it's a very sad environment to live in. Ana-Carolina gets upset when she can hear or see other children in pain, we have to try hide her from it.
"She wakes up to the sound of the hospital helicopter and ambulance sirens and has no windows to let light in, " de Moraes Lobo said.
Though health officials and her parents agreed the best place for Ana-Carolina was at home, it had been almost impossible to make it happen.
National advocacy group CCS Disability Action stepped up to lend the family a suitable three-bedroom home in Orewa for as long as they need.
Auckland DHB agreed to the arrangement and are providing the care package, which includes nursing staff, to support the family in the transition.
A Givealittle page has raised just over $20,000 to help the parents pay rent and make the modifications needed for the home to ensure Ana-Carolina's safety.
Her condition means her immunity is weak and the environment she lives in needs to be kept extremely clean to prevent her from getting an infection and falling ill.
The modifications needed included wooden floors to replace the carpet in her bedroom, a heat pump, extra plugs and a fly screen.
Bircham and de Moraes Lobo said the renovations cost about $15,000 and they were also expected to pay rent to CCS Disability Action.
The pair, a former sales and marketing manager and top project manager, stopped work when Ana-Carolina become ill and had been living off their life savings.
They have put their house on the market and taken out multiple loans to
be by Ana-Carolina's bedside .